As a former Nurse Care Manager for people with chronic illness, I’ve done my share of advocating while my patients were in the hospital. A large part of that work entailed teaching patients how to advocate for themselves, feel empowered within the health care system, and learn how to take charge when it was appropriate to do so.
Just recently, my wife was hospitalized for a very aggressive bacterial respiratory infection, and we were very grateful for the care and attention that she received during her 48-hour stay. Luckily, the infection was caught early enough and timely intervention prevented any serious complications.
In my wife’s case, it was not appropriate for her to make sound decisions when her blood oxygen saturation plummeted and she couldn’t think straight. But once she stabilized, she took the bull by the horns and made her needs known to the staff whenever necessary. As her husband (and private nurse!), it was then my job to sit back, observe, and chime in at opportune times, making sure that t’s were crossed, i’s were dotted, and promised care delivered.
Going to the hospital now during this COVID-19 pandemic is a little different, like:
- Some hospitals will require visitors to undergo temperature and symptom screening upon arrival, perform hand hygiene and wear appropriate personal protective equipment at all times.
- Some say that visitors who are sick will not be permitted to enter the Hospital; this is without exception.
- Some hospitals require visitors to remain at the patient’s bedside throughout the visit unless directed by the clinical team.
- I've seen that some hospital visitors must remain at the patient’s bedside throughout the visit unless directed by the clinical team.
- Temporary visitation may be granted for patients in extenuating circumstances, such as imminent end-of-life and/or a specific patient needing extra support. For example, specific patients needing extra support include those with intellectual and/or developmental disabilities or other cognitive impairments.
- If a visitor does not pass the screening process or does not follow hospital protocols, they will not be allowed to visit. In this case, a different visitor may be selected.
Besides those new regulations during this time of COVID, there are certain rights you are entitled to. Here are some things I learned:
Question Anything
The first thing to be learned about hospitalization is that you have a right to question everything that is done to you---or suggested to be done to you. When in the Emergency Department, we have to understand that, when under duress and slammed with patients, ED docs cast a wide net, ordering tests and procedures faster than you can say “Code Blue”. To some extent, this is prudent and conservative medicine that can save your life. On the other hand, many unnecessary tests are ordered in haste by physicians who simply need to cover their bases (and their posteriors!) in an efficient manner.
This is all well and good, but if you’re uninsured and come to the ED for care, you certainly don’t want to pay for a clinically unnecessary CT scan simply because your doctor was worried she might have overlooked something. Question the relative need for certain tests and procedures, and be on the lookout for lazy ordering that is simply making up for a lack of time for a thorough exam and history.
Too Many Cooks in the Kitchen
Hospitalized patients are usually under the charge of an “attending physician” who may or may not be the patient’s primary doctor as an outpatient. This can matter a great deal to you, because once you are “handed off” from the ED to the hospital floor, a hospitalist will take over your care, orchestrating the game plan with the rest of the team, which can consist of multiple nurses, various specialized physicians, advanced practice nurses (nurse practitioners), anesthesiologists, radiologists, therapists and others. Chances are, this hospital staff member has never...
... seen you before and knows nothing about you, and he or she has dozens of other patients for whom he or she is responsible. Although they are busy people, you have a right to demand their attention and ascertain that they are treating you as an individual, not simply as just another body with a problem.
If you are a patient in what is known as a “teaching hospital”, medical students, interns and “residents” (senior medical students almost complete with their studies) may also be part of the team, and it can be confusing trying to sort out just who’s who.
Remember, if you don’t know who someone is or what they’re doing in regards to your care, ask to see their identification and have them explain their role to you clearly. If you are uncomfortable being examined or treated by a medical intern or student, you also have a right to refuse their care, although this is truly how they learn.
Ask your nurses (and your family) to help you keep notes and understand who is doing what and who is taking responsibility for each aspect of your care. With this information, your knowledge then becomes a tool for asking the right people the right questions at the right time.
You Have the Right to Refuse
At any time during your hospital stay, you have a right to question, refuse or accept any suggested test or procedure. Your body is still your temple even when you’re in the hospital, and you have a right to know what’s being done to you, why it’s important (or not), and what the consequences might be if you refuse. As I mentioned earlier, uninsured patients must be vigilant in making sure only necessary tests and procedures are ordered, but even fully insured patients don’t want tests that seem to be ordered as an afterthought. Understand the care that you’re receiving, and feel empowered to say no (it if feels safe and prudent to do so).
Navigating the Nurses
While doctors may be important to your hospital stay, nurses are crucial, and they will deliver the lion’s share of your care throughout your hospitalization. Nurses are the largest portion of the health care workforce and are one of the most trusted professions in the country in poll after poll. That said, a good nurse can make your day and a bad nurse can make it hell. Therefore, it’s a good idea to establish a good rapport with your nurses and understand their role.
Nurses do indeed carry out orders given by physicians or nurse practitioners (advanced practice nurses), but nurses also have their own science that they bring to the table. On many hospital units, nurses have dozens of “standing orders” which allow them to make independent decisions regarding your care, and they also report their findings to the attending physician or specialist. Nursing science has its own set of non-medical diagnoses and research-based protocols that impact how your care is delivered, and nurses use critical thinking to assess, plan, implement and evaluate patient care. If you’re confused about anything, a nurse is often a good person to turn to for clear information and advocacy on your behalf.
With nurses delivering care around the clock, remember that three shifts generally make up most hospital floor schedules, those shifts being 7am-3pm, 3pm-11pm, and 11pm-7am (except for units that use 12-hour shifts from 7am-7pm and 7pm-7am). This means that in the course of 24 hours, you may have up to three different nurses responsible for you along with their shift colleagues, so you will have to negotiate relationships with three sets of caregivers during the course of each day. “Change of shift” involves the incoming nurses receiving “report” from the outgoing nurses, and these periods of the day are times when nurses will generally be less available to you, so plan accordingly.
The “Charge Nurse” is the nurse “in charge” of the particular floor or unit where you are staying. If you have an issue with a particular nurse, have a question or concern, or want to speak with a nurse with the most authority, ask for the “charge nurse” during any given shift and communicate your concerns to him or her.
Self Advocacy
Nurses are people too, and they understand---or should understand---that you are an individual with individual needs and desires. For instance, my wife found that being woken up every three hours for vital signs and assessments was exhausting, so she negotiated with the nighttime charge nurse to only be awoken once during the entire night. She also negotiated for the door to her room to be kept closed, and she asked for earplugs and a sleeping pill to assist her in getting needed rest. Since my wife has chemical sensitivity, she requested that the floors not be waxed during her stay, and she requested that housekeeping clean the room only with water mixed with vinegar in order to minimize the effects of chemical cleaners on her respiratory status and health. She also refused care from any nurses or personnel wearing perfume or cologne. These requests were honored by the nursing staff, thus my wife’s stay was more restful than it may have been otherwise.
Conclusion
Being hospitalized is no fun, and when we are in the hospital, we are in a vulnerable state, and are often frightened, anxious and not at out best. Use common sense, the assistance of friends and family, and the development of positive relationships with your health care team in order to get the most out of your hospitalization while remaining an empowered and informed patient.
Also remember that the only dumb questions are the ones that are not asked, so be inquisitive, curious, and unafraid to question anything that you don’t understand. You’ll be healthier and more informed in the process.
